(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007 .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!

If you have the "MS Word" program on your computer:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as: Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH! You have now created your own personal "file cabinet" on MAC/MAI! Go to it!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Sue, Volunteer Mentor | @sueinmn | Nov 3, 2020

In reply to @pamelasc1 "Thanks Sue for this info - did you ever have them when you were feeling fine?..." + (show)

Yes, but I have what I call a "broken thermostat" from an earlier case of heavy metal poisoning and one of my meds can have excessive sweats as a side effect. I look for a combo - lower energy, sweats and trouble breathing to determine whether it's my lungs or my other issues. That's when I up my precautions.
Sue

Brenda R. | @brigby | Nov 3, 2020

Me, too, Sue, my thermometer doesn’t go all the way to the top either!

judyhodgern | @judyhodgern | Nov 3, 2020

Hi Pam and Irene I just wanted to be sure that you and others know that there is a side effect of arikayce that can affect the kidneys and I had that and my creatinine went up to 1.53 —too high! I had to go off of arikayce. Bad because I thought that it was helping me and that was a good thing that’s about the only thing that’s affected adversely so far in my journey with Mac and obsesses. I just want to be sure you all knew this so that you were being monitored at least once/ month. Blessings Judy

irene5 Irene Estes | @irene5 | Nov 4, 2020

In reply to @judyhodgern "Hi Pam and Irene I just wanted to be sure that you and others know that..." + (show)

@judyhodgern Thank you for the reminder. I have a UMASS appointment today and will mention that along with other questions. I do get monthly bloodwork which, so far, is ok. Thank you. Irene

pamelasc | @pamelasc1 | Nov 5, 2020

In reply to @judyhodgern "Hi Pam and Irene I just wanted to be sure that you and others know that..." + (show)

thank you everyone for your thoughts about night sweats....all the blood work done in the last two weeks has ruled out anything serious (thank goodness!), so I have to assume that this is related to my lungs and perhaps an infection of some sort (though I feel fine). So far the recent sputum samples show nothing but I am waiting on getting results for MAC (which takes weeks). I will pursue the CT scan and/or xray as well. If the MAC has returned ( have now been free of that since 2017) I will have to decide what "route" to take; the Aricayce seems a little tricky concerning liver issues. Thank you so much for your support! Pam

dee65 | @dee65 | Nov 5, 2020

In reply to @pamelasc1 "thank you everyone for your thoughts about night sweats....all the blood work done in the last..." + (show)

Funny, I’ve recently had the night sweat issue that even manifested itself in the daytime also. I didn’t have a thermometer and it took several trips out to buy one 25 miles from home. No temperature, but my GP had me take a Covid test which was negative. I took Premarin for a month...still had the sweats...didn’t alter my nebulizer or inhaler regimen, and as suddenly as it appeared, it just went away.

thumperguy | @thumperguy | Nov 5, 2020

In reply to @dee65 "Funny, I’ve recently had the night sweat issue that even manifested itself in the daytime also...." + (show)

Praise be to spontaneous remission! Don

judyhodgern | @judyhodgern | Nov 5, 2020

In reply to @dee65 "Funny, I’ve recently had the night sweat issue that even manifested itself in the daytime also...." + (show)

I’m so glad for you —-those can Be awful

Terri Martin, Volunteer Mentor | @windwalker | Nov 7, 2020

In reply to @pamelasc1 "Hello – I am writing to see if anyone who has had MAC, pseudomonas and bronchiectasis..." + (show)

Hi Pam. Yes, I suffered from night sweats for several yrs when I had active mac and pseudomonas going on. Now that those have cleared out and test negative; the sweats are gone. I have been several years free of night sweats, but I do turn the a/c on most of the time at night because I breathe better and sleep better in chilly air. I remember how miserable it used to be though, so you have my sympathy. Hopefully, yours will pass before you know it.

Terri Martin, Volunteer Mentor | @windwalker | Nov 7, 2020

In reply to @anniepie "Thanks very much Terri. I will keep in touch @windwalker. I see the thoracic specialist /..." + (show)

Hello @anniepie. Was wondering how your pulmonology appt went?

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